Community for the chronically ill

Illnesses

Coccyx Pain: How It All Began

I’ve had chronic coccyx pain and a sitting disability since 2012. This simply means that I am in pain when I sit down. The thing with coccyx pain is that in the early days it is left to heal on its own, as there is no plaster cast or bandage or anything that can be put on it. I remember being at my very first appointment with the nurse practitioner, who said that even if it was broken, there was nothing they could do except give it time to heal by itself.

Coccyx (tailbone) shown in red.

I gave it time to heal, but several months later I returned to my GP in exactly the same amount of pain. I had an MRI and a sit down/stand-up x-ray, and I got various opinions about a diagnosis – from “it looks normal” to “it could be fractured.”

Over the next year or so I saw numerous specialists and tried all kinds of treatment – physiotherapy, exercises, chiropractic treatment – as well as numerous types of medication and painkillers. But nothing seemed to fix the problem or stop my pain. I saw an orthopaedic surgeon who gave me a diagnosis that my coccyx was dislocated in two places. He tried some more treatment, which didn’t work, and said the last resort was to have my coccyx removed. I had the surgery in February 2015.

A Major Surgical Decision

Despite the high risk of infection because of the location of the surgery, six months recovery afterwards, the two years before I would know if the surgery had worked, and the high chance that having my coccyx removed wouldn’t solve the problem, I wanted to give it a go. I couldn’t carry on as I was. I was miserable, I’d put my life on hold, I was saying no to doing stuff with my family and friends, and I was becoming a person who I didn’t like.

In early 2017, two years after my coccyx was removed, I knew the operation hadn’t worked. I knew this much earlier in my post-op recovery, but there was always that little glimmer of hope that kept saying I needed to wait the full two years.

Since having the operation, I now suffer from neck pain, too. For a while I was convinced that the surgery had caused another problem, but my physiotherapist says this pain is caused by my many years of abnormal sitting, which has caused damage to my spine. Literally, by avoiding one pain I have caused another.

The Challenges of My Pain

A sitting disability is a very challenging pain to have as we do so much sitting down: eat meals, watch TV, relax, drive, work, the list goes on. I had years of frustration and anger, as no one seemed to take me seriously.
Having an invisible health condition or disability can be difficult for others to understand when there is nothing physical to see. You feel you have to justify yourself all the time, and explain the pain and why you’re doing something different to how others do things. For example, when I’m the only one standing and everyone is sitting, or why I’m sitting on a special cushion.

I find it embarrassing to explain things to people who don’t know about my pain. It’s often easier to try and hide my pain, not make a fuss, and try and carry on without having to explain myself all the time. I often worry what people think and if they actually believe me.

I have also found that my anxiety has got worse since having chronic pain. A big part of this was the amount of time I spent at home as part of my recovery after my surgery. Since I wrote a blog post about chronic pain and anxiety, I’ve learnt it’s a natural symptom due to the body being in a constant fight or flight mode.

My chronic pain affected my work, too. Unfortunately I had to step down from a team leader role, which was very difficult to accept. I had worked hard to progress my career and step up the ladder, and it was even harder to take a pay cut. But I knew I was lucky to have the support of my employer, and was extremely lucky to still have a job.

How I’ve Overcome Some of my Struggles

The turning point for me was changing my mindset. I knew I had to accept my pain, stop fighting for more tests and a diagnosis, and just focus on getting my life back and doing the things I enjoy as best I could. So that’s what I did. It was easier than I thought. I knew all along that if the operation didn’t work, there was nothing more they could do, which meant there was nothing more I could do. I read a book called Beyond Pain: Conquer Your Pain, Reclaim Your Life by Anjelo Ratnachandra and it really changed my way of thinking. My attitude became: I’d rather be in pain doing the things I enjoy, than be in pain doing nothing and be miserable.

Focusing My Energy on the Right Things

I also learnt to focus my energy on the right things. Chronic pain is mentally draining – I was constantly thinking about the pain, how to avoid the pain, and how to manage the pain. This took a lot up a lot of my energy and added to the physical fatigue, which is a natural symptom of chronic pain.

This led to me focusing on what I can do, and not on what I can’t. Yes, I have to do some things differently, or I use aids to help me when I sit down. But these help to take away the barriers and allow me to say “yes” to doing stuff as often as possible. I have learnt to be innovative in my thinking about how I can carry on doing the things that I enjoy. For example, I love going to the cinema with my partner, so I go to a cinema that has recliner seats or sofas. I’m never completely pain free, but if it means I can spend quality time doing something I love, with the love of my life, then I’ll give it a go.

Doing What I Enjoy

I’ve learnt a lot about endorphins since reading Anjelo’s book. When we do things that we enjoy or that make us happy, our body releases endorphins and these are a natural pain relief. This has really motivated me to carry on doing stuff that I enjoy. Again, I’m never pain-free, but I’d much rather be doing an activity or task that makes me happy and can help distract me from my pain. I write regular blog posts about the things I’m so glad I’ve done to show that you can do the things you enjoy despite having chronic pain. Everyone’s challenges are different, and it can take time to get to this point in your chronic pain journey.

There is no treatment or medication that can take my pain away. It’s simply a case of managing my pain as best I can. I use heat packs, physio tape, and do lots of walking and different exercises to help stretch my muscles. I’ve also learnt to manage my anxiety and stress levels so they don’t have any further impacts on my pain. Stress and anxiety naturally make me feel tense and cause tightness or knots in my muscles which cause additional problems and pain. Since September 2017, I have been seeing a physiotherapist to help with treating my neck pain. I’ve spent hundreds of pounds, but I am finally at a point where I only have to go every 6-8 weeks for maintenance treatment. My abnormal sitting has caused issues that cannot be reversed, so I have to make sure that I keep on top of this to stop things from getting any worse.

Setting Goals and Challenging Myself

I like to challenge myself as this gives me something to work towards and focus on. I set myself different goals to try and push myself out of my comfort zone to build on my confidence and help tackle my anxiety. Some examples include: trying to hit 10,000 steps a day, leading web conferences at work, and setting up and writing my blog. I’ve found this has turned something negative into something positive, and I love that I am able to help others think differently and learn to cope better and live a more positive life with their pain.

In work, I was fortunate to be offered another job as a workplace adjustment under the Equality Act. It was certainly a worrying and difficult journey to go through, but I had several workplace adjustments and am able to still work full-time.

The Things I Still Struggle With

I don’t think I’ll ever fully cope with everything my pain throws at me. I’ve come a long way, and have challenged myself to change my mindset and ways of thinking alongside doing things differently, either with or without support and adjustments. I know there are still some areas of my chronic pain life that are difficult to cope with or accept. Like anyone with chronic pain or a chronic illness, I still have bad days and struggle to cope, and I still find it embarrassing to explain my pain to others.

Bad pain days are difficult to cope with both physically and mentally. Getting comfy is the most challenging thing for me, and by avoiding one pain I often make another pain worse.

On these days I just have to accept that I won’t be as productive, motivated, or happy as usual. I make sure I distract myself and keep my mind busy as much as I can so I don’t overthink and dwell on things too much.
I especially struggle when I have other pains on top of my coccyx and neck pain. I also have endometriosis, and struggle with the symptoms of this as well as additional fatigue. I’m the same when I have a cold or bad headache, as everything just gets so much more difficult to manage.

I find it hard when my pain affects other people. If my pain is bad and I can’t do something with my partner, I find it very upsetting and hard to accept. My partner is brilliant, and she will never pressure me to do something that she knows I will struggle doing. It doesn’t stop me feeling guilty, though.

Another thing I struggle with is trying not to overdo things on good days. I keep pushing myself to carry on because I get a sense of achievement or I’m simply enjoying myself or having fun. But I know this often affects me the next day and I can feel exhausted. Sometimes this isn’t always a bad thing, as I’m making the most of being productive and having a good pain day. But it’s much more sensible to balance and pace my energy and not burn myself out.

Summary

Despite all of my challenges, I still believe in fate. I’ve been on a journey that has taught me a lot and I believe I am meant to be where I am in life right now. I’m doing a job that suits me and my skills better than my last job, and I’m writing a blog that will hopefully help and inspire others to cope with their chronic pain better.

About the Author:

Alice lives in the north west of England with her partner and her two Westies.
Her blog Notebooks and Glasses is about living a positive life with chronic pain: her words and observations. She gives real advice and tips and shares experiences of staying positive despite having chronic pain, and encourage people to carry on doing the things they enjoy.

Anxiety is a debilitating disorder. It varies in its intensity from person to person. Anxiety will also be triggered in different ways for different people. It can cause a loss of appetite, tension in the muscles, headaches, and problems sleeping. Anxiety can bring on panic attacks which are terrifying. It can cause you to feel more pressure to find relaxation in your life. The stress you experience chronically can also turn into depression.

Why It’s Important to be Free From Anxiety

The thing is, anxiety does things to your body and your mind. When you’re in a constant state of anxiety, you cause cortisol levels to rise in the body. These are chemicals released to give your body the ability to respond to danger. This was a necessary response that worked well when we used to have to strive for survival. We now use that system (flight/fight response system in the CNS) for trivial matters. They don’t feel trivial to us. The things that trigger anxiety in each person feels legitimate and overwhelmingly hard to manage. The levels of cortisol in the body can become too much and it can begin to damage systems. It can cause inflammation in the body and other discomforts may arise. You will feel this constant state of anxiety even when you’re in the midst of resting.

How Breathing Helps with Anxiety

The breath does a lot of amazing things for you. It’s why we’re alive at all. It’s what gives you energy. It’s automatic for us to breathe so we take it for granted. Many times, you don’t realize that you might not be breathing deeply enough. The more fresh oxygen you bring into your body, the more you dispel carbon dioxide. It’s an important aspect of living.

Practicing your breath daily can help you with whatever emotional struggles and worries you have. Taking time out for yourself and breathing through discomfort can be deeply relaxing. When you’ve built up a chronic feeling of anxiety, you can work to build relaxation strategies through the breath. Breathing deeply has shown to be a highly effective way of relaxing the central nervous system. Cortisol levels lower. It also puts you in the headspace of being mindful.

When you’re focusing on how to breathe in certain ways, you stop thinking about your worries. As you breathe, you can focus breathing into parts of you that are tense. This is good practice alongside the actual breath that helps soothe the nervous system.

Here are some of the most soothing ways of breathing that have been shown to help with anxiety.

1. Ujjayi breath

This breath is often used during a yoga practice which is another helpful practice you can use against anxiety. There is an even deep inhale and exhale you’ll do as you count to four. It helps to make you feel more grounded.

How to do it:

Start with an inhale. You’ll want to slightly restrict the back of your throat. It should sound like the ocean. Inhale to a count of 4.

As you exhale, you want to keep your throat restricted. Count to 4.

Repeat this as many times as you want to give you a sense of relaxation. Ensure your breathing is slow and steady. Focus on the restriction of the back of the throat. If the ocean sounds cease, it’s likely you’re not focusing on what you’re doing. This is a good gauge to help you pay attention and sit in your present moment.

2. Alternate Nostril Breathing

A lot of people will experience their anxiety at night. Sleepless nights due to ruminating thoughts are common. It’s additionally a problem for someone with anxiety who is worried that they won’t sleep. This actually causes them to not be able to fall asleep. A beautifully relaxing breathing exercise is alternating nostril breathing.

How to do it:

Each nostril stands for something. Like yin and yang, the nostrils are opposed but working together. If you want to get yourself relaxed for sleep:

Place your thumb on the right nostril and breathe in through the left nostril.

The left nostril is connected to your parasympathetic nervous system. It calms the body and mind when you trigger this part of the central nervous system.

If you need to relax and rejuvenate in the middle of the workday, you can alternate the nostril breathing. This creates a balance in the body so you are less inclined to get stressed out over things.

How to do it:

Cover your right nostril and breathe in through your left nostril. Exhale and inhale. Then cover the left nostril and exhale/inhale.

If you do this around 10 times, you should notice that you feel more centered and relaxed.

3. Breath retention

You may notice that holding your breath and then exhaling with a lot of vigor is helpful in relaxing you. That’s because it is. When you hold your breath, you activate the parasympathetic nervous system. When you do this, it releases GABA chemicals. These chemicals are designed to help you feel calm and relaxed. The body has the ability to relax you but you have to prompt it to do so. There are a lot of ways you can choose to hold your breath.

Beginners can start by doing this:

Breathe in slowly and deeply, counting to four.

Exhale a little bit of that air out but hold the rest of the breath in for four seconds.

Exhale more so that lungs are half-full. Hold for four seconds.

Exhale down to three-quarters of air in your lungs. Hold for another four seconds and then finally exhale whatever air is left in the lungs.

The more you do this, the longer you’ll be able to hold breath in. You don’t want to push yourself too far with this exercise. No need to gasp for air. You can build up to inhaling to a count of eight at some point. Whatever feels comfortable for you. This is an excellent exercise to do while you’re in the midst of an anxious episode.

The next time you do feel anxious, you should have the necessary tips to help calm your central nervous system down. When you’re feeling anxious, use this breathing technique to relax you immediately. Deep breathing and focused breathing has been shown to be an effective tool to relax the body at a cellular level. It also prevents your brain from thinking about the things that are causing stress in the first place. This has been seen as an effective stress and anxiety management technique. You can fight against anxiety as it sets in as well as reduce the physical manifestations that chronic anxiety causes.

About the Author

Meera Watts is a yoga teacher, entrepreneur, and mom. Her writing on yoga and holistic health has appeared in Elephant Journal, CureJoy, FunTimesGuide, OMtimes, and others. She’s also the founder and owner of SiddhiYoga.com, a yoga teacher training school based in Singapore. Siddhi Yoga runs intensive, residential training in India (Rishikesh, and Dharamshala), Indonesia (Bali).

Where do I even begin…? December 2016 would be good start. The date where it all began. I remember it all so vividly, it’s like my eyes weren’t really open until December hit and boy was I in for a surprise.

December 2016

The weather was around 9 degrees and icicles had begun forming under my nostrils. Despite the weather I was getting my life started. I was looking for work, starting driving lessons and ultimately beginning to feel like an adult. It was about the start of December when my feet started acting weird. They looked like they belonged to a corpse. I’d wake up and my toes and fingers would be purple. They would feel like pins and needles or I couldn’t feel them at all. I didn’t have time to piece things together though. I was beginning my adult life. Onwards and upwards my friend. Driving lessons were around the corner, I mean, I was so excited, who wouldn’t be?

A few weeks had passed and it felt like I had been driving for years. Then in mid-December I woke up with distinctly purple toes. I’m not talking a light bruise sort of purple. I’m talking deep purple, like black purple. I brushed it off though, like heck, my body’s weird already. I’ll just add that to my list of oddities. I hopped into the car and hit the clutch … WOWZERS … I can still remember the pain. It was like someone pushing my feet into a pile of needles. Why the hell did I feel like that? I walked myself home and immediately threw my shoes off. On two of my toes, on both feet there was a circle, a perfect circle on the sides, purple, soggy looking and green under the nail, gross right?

I decided to put my life on hold. Not because I wanted to, no, because I HAD to. Two months of not doing anything, having to cancel everything as walking became a chore. I was gutted, no interviews, no driving and generally not doing anything other then laying or hopping around the house. It was time to see the GP. I so dread a GP visit.

After the first GP visit I had I was told it was a benign Neuroma. I was referred to a rheumatologist for an ultrasound of my feet (how exciting!!!). A month had passed (3 months altogether) and whatever it was on my feet was still there, so another GP appointment was in store for me. Deep joy…

March 2017

Hospital time. I had been referred to a rheumatology department by my GP, for what I thought was just cadaver looking toes. It turned out to be chilblains, which then turned out to be Raynauds. Raynauds? What in the world is that? Sounds like a fancy French dish to me.

“Raynauds is a condition of the circulatory system in which blood vessels in the fingers and/or toes spasm in response to changes in temperature, which causes them to turn white, blue, purple and red as the supply of oxygen is diminished. Raynauds may occur alone or be part of another condition.”

Now that’s what scared me “may be a part of another condition”.

July 2017

Oh man, it’s hot … 30 degrees and sweat is dripping off of every orifice I have (TMI I know). I have now been officially diagnosed with Raynauds for a while so it had become a part of me; I was trying to figure out ways of dealing with it and trying to cope. Luckily summer wasn’t much of a problem for the cold. What was a problem though was the heat. My feet looked like raw chipolata sausages, bright red and so sore, not sore as in a cut sore, sore as in I’ve only been standing for 5 minutes but it feels like I’ve been standing in the heat barefoot on hot sand for an hour. The heat was affecting me more then usual and this was when I took to finding support on Facebook groups. Everybody had started mentioning something called Erythromelalgia to me. Now what in the world is that? Sounds hectic and man were they right about it.

October 2017

Another hospital appointment folks, how fun. I showed my rheumy all my photos I had compiled of my tomato toes and sausage hands during the summer hoping, but dreading something would come of it.

Ah, Erythromelalgia. They were right.

“Erythromelalgia (EM) is a rare condition that primarily affects the feet and less commonly the hands. It is characterised by intense burning pain of affected extremities. Severe redness and increased skin temperature.”

This wasn’t all I had found out. I also have low blood pressure and a positive ANA. A positive ANA (Antinuclear Antibody) means there is an antibody within my body fighting everything, my blood, organs, the lot. The ANA will usually show you what secondary Raynauds you may have, whether that is Lupus, Scleroderma or a rarer condition. They have no clue what it may evolve into or if it will evolve into anything else at all.

April 2018

Who’s ready for some more weirdness?

This really nasty stuff starts happen to my fingers. That’s not only the best way to describe it, but really the only way I can describe it. In a nutshell all 10 of my fingers:

Form crusty calluses around and under my finger nail

Have brown, red and purple spots around and under the fingernails

The whole finger becomes incredibly sore, the smallest of things that come into contact with my fingers makes me flinch with pain

The whole finger, from knuckle to nail, itches like crazy

It came totally out of the blue, on all fingers and has continued on and off since December 2017. After a trip to the GP, she ruled out a fungal infection and referred me to see a dermatologist. The dermatology appointment was fantastic. She looked at all the photos I had taken and asked for me to send them to her, not only to be put in my file, but to be used for research. I received a letter from the appointment a few weeks later stating I have another appointment in November for a scratch test (to see if its an allergic reaction). However the doctor believes it to be Subungual Hyperkeratosis and/or Pompholyx.

March 2018

Snow. Snow everywhere. Thick socks, a hat, gloves, winter boots, winter coat and jumpers. Yet my toes would not take to the warmth. Then came the EM. Once I tried to warm myself up the EM would flare up. Ergh, when will this ever end?

It was a few weeks into March when I woke up at 4 in the morning feeling like I was going to puke, that uneasy feeling in my stomach and the light-headedness. Nothing came out, but that feeling never left. I went into work feeling like I was going to vomit everywhere. It makes you feel on edge, like what if I did puke everywhere? How embarrassing. The only thing that stopped this feeling? Eating. I decided to visit my nearest pharmacy. They informed me that it sounded like acid reflux, but if this problem persists longer than a week then a GP visit should happen. It was time for yet another GP appointment. Turns out that it is in fact GERD.

“Gastroesophageal reflux disease, or GERD, is a digestive disorder that affects the lower esophageal sphincter (LES) the ring of muscle between the esophagus and stomach.”

Great, another thing to add to the list. On the plus side though, I was prescribed meds that completely made it vanish. Since then it has vanished unless I eat or drink something my stomach doesn’t like such as juice, a fizzy drink or weird fruits and vegetables.

June 2018

My rheumy appointment hath landed, it was same old, same old really. Until I mentioned joint pain. My pain is really weird, it used to last a week a month on just my right wrist and right ankle. Now, it’s still in the same places, but pops in every day. That’s when my rheumy mentioned “”Hypermobility”.

“Joint Hypermobility Syndrome is a condition that features joints that easily move beyond the normal range expected for that particular joint. Hypermobile joints tend to be inherited.”

Explains why my hip pops out of place every now and again though. I dread to think what this means for the future. That’s where today comes into play; onwards and upwards all. I have four more appointments this year, three dermatology and one rheumatology. As you can see, it’s become a habit that at every appointment that I have something new diagnosed.

Stay tuned though. I’ll be sure to keep you all updated on my roller coaster of a journey.

My name is Capricious. I’m 46 and I live among the rolling bluegrass hills of Kentucky.

I took the name Capricious after decades of being forced to constantly compromise and change plans. What I wanted to accomplish never quite lined up with my capabilities, making it appear that I was fickle or impulsive to the outside world.

I was diagnosed with the rare genetic disorder known as Hypermobile Ehlers-Danlos Syndrome (hEDS) less than a year ago. Ehlers-Danlos Syndrome is a disorder which affects the body’s production of collagen and can affect everything from the joints and skin to bones and organs, as collagen provides a matrix for almost every material making up the human body. I searched 19 years for answers about what was wrong with my body and visited dozens of doctors. In the early years, I was often told to lose a few pounds and exercise more, that my pain couldn’t possibly be that bad, and was sometimes accused of somatization.

Eventually, as my condition grew more severe and the problems too obvious to ignore by doctors, I was diagnosed with a kidney disease called focal segmental glomerulosclerosis (now in remission), degenerative disc disease, carpal tunnel syndrome, fibromyalgia, chronic fatigue syndrome (ME/CFS), a form of dysautonomia common to EDS called Postural Orthostatic Tachycardia Syndrome (POTS), osteoarthritis, irritable bowel syndrome (IBS), Gastroesophageal Reflux Disorder (GERD), severe chronic migraine, tension headaches, cluster headaches, endometriosis and polycystic ovarian syndrome (PCOS). Since my diagnosis with EDS, I’ve also been working on obtaining diagnoses and help for the additional comorbid conditions of gastroparesis and a Mast Cell Activation Disorder, for which I clearly meet the clinical criteria.

Uncomfortable with my initial diagnoses of fibromyalgia and ME/CFS and convinced they didn’t fully explain my experiences, I was always on the lookout for other explanations. I had a lifetime of issues that only got worse with age. This didn’t seem to be true of most of the other ME/CFS and fibro patients I knew or read about who had a sudden onset of symptoms.

Early Onset of Symptoms

For me, everything started in my early teens, which I now know is quite typical of EDS “zebras.” Even before that, I was a sickly child, frequently fighting systemic infections and viruses, often struggling with allergies to body care products, perfumes and cleaning products. As a teen, I battled insomnia, fatigue and pain in my legs and feet, lower back pain, and headaches. I had a lot of stomach issues and my allergies grew worse. My periods were unbearable, with terrible cramping, hormonal fluctuations, migraines, and alarmingly heavy flows. At 19, I herniated two discs in my spine lifting a patient, only I didn’t know I had because doctors refused to do any imaging until I was in my mid-30’s, always telling me my pain couldn’t be that bad.

By my early 20’s, I found working on my feet excruciating and exhausting. I went to school to try to escape manual labor and customer service positions. While in school, I tore my Achilles tendon walking up stairs at a leisurely pace. I thought this very strange, but no one else seemed to care. Or perhaps they simply didn’t believe me, even though by then I’d had tendonitis in almost every major joint in my body. I had odd pains all over. Sometimes my joints didn’t work right and would pop and throb. It was many years before I discovered that these were subluxations, the close cousin of dislocations. The joint is still somewhat operational, but not quite in place.

Before graduating in 2003, I was diagnosed with kidney disease and started having my first symptoms of dysautonomia; heat intolerance and hydration issues which caused me to have heat stroke at an amusement park and a near heart attack during the flu. My gastrointestinal problems became chronic and I began taking prescription medication for my GERD.

I was accepted to a graduate program at the University of Cincinnati and provided with a Presidential Fellowship for my academic work. I started the fall of 2003, as I was already 30 and didn’t want to delay my career any longer than necessary. My dreams were all coming true and I was excited to embrace this next phase in my life. But I was utterly defeated within 3 weeks by the terrain of the Appalachian foothills. It seemed every class I took or taught was uphill from the last and I didn’t have the energy to walk that campus and compete as a graduate student and teaching assistant. I was forced to withdraw.

I returned to work for a company I had temped for through most of the summer. I became the executive assistant to the Vice president, a grueling and stressful position that demanded much of me both physically and intellectually and my time was entirely the VP’s. It mattered not if it was 3am or 3pm. I crashed under the weight of the physical and emotional stress and took a part time job while trying to grow a business in real estate, but both were too physical and demanding and I soon took another administrative position, this time in Human Resources with a small company. Each move appeared whimsical and strange to the outside observer, but each was to accommodate my ever growing list of health problems.

Total Disability without Diagnosis

My kidney disease resolved, but the fatigue, heat intolerance and ‘chronic dehydration’ issues did not. Despite working out, eating well and taking the best care of my body in my life, my digestive system eroded, my injuries only compiled and my back pain became constant and severe. I began having migraines at least weekly and my insomnia was a near constant companion. In late 2008, when my back pain changed and became so severe I could barely walk, I was forced to leave regular employment. I finally had surgery after much delay in late 2009.

Instead of returning to work after my surgery and recovery in 2010 as expected, I found that I was left with all over body pain, worse fatigue and the migraines that sometimes bothered me had become frequent visitors. My undiagnosed POTS had grown so severe that I collapsed in the post office in 2012 and after that, I was always at risk on my feet.

By 2013, I spent so much time with severe migraines, dizziness, nausea and vomiting, I was spending more time in my bed than anywhere else. Sometimes, my migraines would last for several days, completely unresponsive to meds, leaving me powerless to do anything but lie in a dark room with a bucket beside me. Simply standing would bring on waves of nausea and dizziness. If I raised my hands to get a dish from the cupboard, most days I would end up on the floor.

By 2015, I could hardly leave my own room unassisted and I didn’t really want to. My head pain was constant, my eyes so light sensitive I couldn’t bear to look at a computer or phone screen and my memory and concentration so poor I couldn’t even read. I languished in that bed, usually unable to sleep due to severe insomnia and pain, for weeks at a time. I was constantly plagued by subluxations, muscle spasms, and had developed tremors and yips. I vomited regularly. My body was on fire and I was under constant attack by strange symptoms. I had few drugs to help me through.

Desperate for Answers

Since I am allergic to or intolerant of most pain relievers and neuropathic drugs, I was denied sufficient pain relief. All I had to rely on was Advil, a mild muscle relaxer, and my triptans. In the face of the kind of pain I was dealing with, these treatments were laughable. By 2015, I was determined to make up for all the ways modern medicine and my doctors had failed me. I was determined to find viable treatments and prove the doctors wrong by figuring out what was really wrong with me and do everything in my power to get better.

Every moment that I could bear was spent at a computer researching and reading, trying to discover things that would help me crawl out of the deep well of pain I was trapped in and the origin of my problems. I discovered POTS and helped my doctor figure out who to send me to for diagnosis. I found antioxidants and natural pain relievers that helped some, but I never found a viable diagnosis, try as I might. I eventually learned about EDS through an awareness meme shared by a Facebook friend. I was intrigued by how well its primary features seemed to fit me and might make sense of my whole history. It took me a year to find and obtain an appointment with someone who could diagnose me, but by the time I was done with my research, I was certain I had finally found the answer.

Post-Diagnosis Wins and Losses

Diagnosis felt like a huge victory after 19 years of unanswered questions, excruciating pain, fatigue, and dozens of peculiar symptoms. I didn’t even wait for a doctor to diagnose me to start learning about EDS and how to take the best care of my condition. I joined Facebook groups and read all the research I could find in an effort to understand the disease and begin taking advantage of the copious advice available. I started following the advice of other patients and leading experts in the field of Ehlers-Danlos research and treatment. I began taking supplements, doing physical therapy and myofascial therapy to relieve pain, protect my joints and help heal some of the cognitive deficits I’d been suffering from for years. I started new medications with the help of the doctors I did have. By the time I was diagnosed, I was feeling much better.

I was so relieved and feeling so much better in fact, that I was flummoxed when I attempted to work a few hours a week driving for Uber only to fail after a few months. The short drives would inevitably put me back to bed with migraines, fatigue, and other symptoms. It wasn’t until a few months later, when spring hit and I was suddenly severely allergic to pollen (and within weeks, almost everything else in the known universe) that I put together that it was likely a mast cell disorder wreaking all of this havoc. Having dealt with an odd history of unusual allergies that sometimes went away and sometimes came back with a vengeance, I knew a mast cell condition was a strong possibility when I’d first learned it was a common comorbid condition. But I had put it on a list to address later, thinking it wasn’t such a big deal since I was feeling so much better. Of course, since putting it off has caused this cumulative and extreme effect, I certainly wish I had taken it more seriously.

As Ehlers-Danlos Syndrome and most of the other conditions I have are incurable, I will never be well. However, knowing what I have and how to treat it has been absolutely invaluable and given me more of my life back than I dared to dream. I’m still mostly housebound due to mast cell issues, but I’ve come a long way in the short time that I learned about EDS and its common comorbid conditions. I am able to read, write, draw and paint again. I can care for myself and my home unassisted and most weeks I get out to run errands and go to appointments without major payback. Some weeks, I even enjoy a nice afternoon out with my husband at a movie, museum, play, festival or sporting event.

Perhaps most importantly to me and my mental health, I get to write and feel somewhat productive again. I really enjoy sharing all I’ve learned with others, here at the Unchargeables and The Zebra Pit. It not only helps me feel like I’m paying forward all those good deeds, when others helped me find solutions for my specific problems, but gives me a sense of purpose and puts my degrees to good use. I’ve also made some pretty amazing friends along the way.

I know my future is as uncertain as ever, but I still have a lot of hope. I’m no longer bitter about the years of being denied a diagnosis or the disbelief I often faced about my illness from doctors, friends and family. I know that no matter what happens, I now have a cadre of experts, along with my own research skills and creative abilities, to help me solve whatever comes along. My future may be uncertain, but that doesn’t mean I have to live in constant fear. There’s a big, beautiful world out there I’d much rather focus on instead.

About the Author:

Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.

WHAT IS THALASSEMIA?

Thalassemia is a genetic condition more prevalent in individuals of certain ancestries that can result in anemia. People with thalassemia have mutations in the cells that create hemoglobin. Hemoglobin is needed to store and carry oxygen in the red blood cells, leaving those with this condition fatigued. Mild thalassemia may be managed with life-style changes but severe forms may require blood transfusions or stem cell replacement therapy and can impact life expectancy.

Types of Thalassemia

There are two types of thalassemia: alpha and beta. The type that a person has depends on which proteins in the hemoglobin DNA are affected by mutation. The severity of the disease and the symptoms a person experiences is determined by the type they have inherited.

Alpha Thalassemia

Two genes from each parent, for a total of four genes, are required to make the alpha globin protein chains. The chart below shows how missing any number of the genes leads to alpha thalassemia.

Missing Alpha Genes

Disorder

Anemia

Other Names

1

Silent Carrier

None

Alpha thalassemia – 2 trait, alpha thalassemia minima

2

Trait

Mild

Alpha thalassemia – 1 trait, alpha thalassemia minor

3

Hemoglobin H

Moderate

Hemoglobin H disease

4

Major

Fatal

Hydrops fetalis with Hemoglobin Barts

Beta Thalassemia

One gene from each parent is inherited to form the beta hemoglobin chain. The chart below shows how the affected genes cause various forms of beta thalassemia.

Affected Beta Genes

Disorder

Anemia

Other Names

1

Silent Carrier

Mild

Beta thalassemia minor

1

Trait

Mild

None

2

Intermedia

Moderate

None

2

Major

Severe

Cooley’s Anemia

Signs and Symptoms of Thalassemia

Individuals with thalassemia have symptoms that vary in severity depending on the type they have inherited. Some persons may be silent carriers with no symptoms but others may have mild symptoms that minimally impact their life. Still others may have symptoms severe enough to require life-saving interventional treatments.

Diagnosing Thalassemia

Thalassemia is typically diagnosed within a child’s first two years of life by their pediatrician. As thalassemia is a genetic disorder, many parents will be aware of the risk and their health care providers will know the symptoms for which they need to be watchful. A complete blood count (CBC) will measure the hemoglobin and size and quantity of red blood cells. A type of test called a reticulocyte count can determine if the bone marrow is producing enough new red blood cells. Iron studies can determine if the cause of anemia is due to iron deficiency. Genetic testing may be used especially in cases of a family history of alpha thalassemia. Sometimes people choose genetic testing in family planning. Besides that, prenatal testing is possible when there is an identified family-history risk.

Treatment for Thalassemia

Treatment depends on the type and severity of the symptoms. Mild thalassemia may require no treatment or a patient may require a blood transfusion a few times during their lifetime. Moderate to severe thalassemia could require regular blood transfusions as often as every few weeks. This procedure can lead to the build up of iron, therefore patients would need to be treated with medications for iron overload. Some hospitals are now treating thalassemia with stem cell transplants. This procedure is capable of eliminating the need for transfusions in some patients. Most patients with thalassemia will be able to live full lives, but in severe cases life expectancy could be reduced.

T.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday.

When’s the last time you were really honest with your doctors? Never? That used to be me.

Anyone with any type of chronic pain knows that there are better days, bad days, and the worst days. If you battle chronic pain, I’m also betting you minimise it to those around you. You put on a brave face and don’t reach out for medical support anywhere near as often as you should.

I’m very much the same. I rarely reach out to my team of medical professionals unless I really, really need to. This is partly because of numerous negative experiences in the past and partly because I don’t want to be a bother. However, a month ago I went from feeling as well as I ever will be, my version of normal, to feeling worryingly unwell in just a matter of hours.

A Flare-Up Like No Other

Not a lot scares me when it comes to my health. To my husband’s frustration, I continue to minimise even the severe symptoms and won’t admit when it’s getting to be more than I can handle. However, on this day I was genuinely scared by this sudden onset of pain in my ankles (later spreading to other joints). This, and the other symptoms that I had, felt like no other flare up I’d ever experienced. So I reached out to my GP, but failed to get past a particularly obstructive receptionist. I didn’t have the energy for a battle, so I accepted her dismissal and ended the phone call.

Several hours later I had grown much worse, so I called back for an emergency appointment. I was refused this, so I asked for a GP to ring me back. After several requests, I was granted this. To cut a long story short, my GP was unhelpful at best and entirely dismissive at worst, which was surprising as she had always been one of the better ones. I was refused stronger pain medication and told to wait until morning for a blood test.

A short time later I had become utterly consumed by the pain and was genuinely becoming very concerned. I called an out of hours service who wanted me seen immediately, given that I have a disease which means my immune system isn’t working. I’m also on a lot of complex medications which can cause issues of their own (as well as suppress my immune system). It turned out theirs was the right call. I ended up in hospital for a week while the doctors tried to get my pain back under control and work out what on earth had happened to cause such a rapid decline in my health.

Never Was A Story Of More Woe?

Before I share what happened next, I wanted to just pause to share the purpose of this article. Now I know you may be thinking this is a tale of woe and misery. But it does have a positive ending. I’ve chosen this experience to write about because it’s one I come across time and time again in the chronic illness community. I hope to encourage you to speak out the next time it happens to you…in whatever form it may take.

So, there I am stuck in hospital, exhausted but in too much pain to sleep. I was trusting the medical professionals around me to care for me and get to the bottom of what was going on.

Issue #1: You Can’t Still Be in Pain!

The first issue that cropped up was several nurses trying to tell me that the morphine MUST be stopping my pain. They questioned how I could possibly still be in agony while pumped full of IV morphine and slow release morphine. I couldn’t answer that; I just knew I was still in a lot of pain even with all these drugs in my system. My rheumatologist later told me he wasn’t surprised that morphine only just took the edge off the pain because it isn’t really designed for this type of pain. Sadly, there is currently no alternative.

Issue #2: Oops…

The second issue that cropped up was that the hospital delayed contacting my rheumatologist, despite my numerous requests because I knew he would know what to do. When they did eventually contact him and get his recommendation, which was steroid injections to try and get the inflammation causing the pain under control, they accidentally administered the injections twice! Thankfully it did me no harm, but it was far from reassuring.

Issue #3: A Ridiculous Diagnosis

The third, and perhaps most important issue, was when a junior doctor decided I didn’t have Rheumatoid Arthritis. Unknown to me at the time, she had checked my bloods. (My blood tests are different from many of those with RA because I am seronegative). Despite there being a wealth of information on file from my specialists, she decided she would interpret my bloods with no experience of autoimmune or inflammatory disease. She concluded that I didn’t have Rheumatoid Arthritis at all. What she did conclude was I must have simultaneously broken both ankles without realising. Go ahead, you can laugh. I did when I later found out because it was so utterly ridiculous. However, many of you with a chronic illness will know this type of experience is not unusual, which is no laughing matter.

At the time this junior doctor was “treating me,” I had no idea about any of the above. She lied and told me the Rheumatology department had requested x-rays of my ankles. I went along with this because it wasn’t unreasonable. I had the x-rays despite crying with pain trying to bend my feet into the correct position for the radiologist. The doctor later made a passing comment that my x-rays showed I hadn’t broken my ankles, which I thought was odd, but was too exhausted to think more about it.

The search for the cause of this crazy pain continued. Eventually I got so fed up, I called my rheumatologist from my hospital bed and got an emergency appointment with him the following day. It was only as I was being discharged that following day that a doctor came to apologise to me. I had no idea why she was apologising until she explained the junior doctor who requested the x-rays had been reprimanded for requesting them and for jumping to incorrect conclusions about my diagnosis.

Speaking Up

Normally, I would have smiled and said it was fine and let it go, because I have the utmost respect for medical staff. They have an incredibly challenging job, and I understand all doctors must learn and knowledge comes with experience. But this time something stopped me, and I called the doctor back and asked if I could speak with her. I spoke more calmly than I felt when I told her that the care I had received in her hospital was well below the standard I expected. I highlighted several issues (some not included in this article) that I was unhappy with.

Most importantly, for the first time in five years, I then went on to tell her honestly how it feels when medical professionals don’t believe you or your pain levels and the damage that can do. It was an emotional conversation, but by the end I was so glad I had done it. A doctor heard, for perhaps the first time, how it feels to be a chronically ill patient and how much harm it can do when doctors don’t believe us. She appeared to take it on board and discussed action she would take to help other staff understand more about invisible illnesses and chronically ill patients. I hope it made some difference that I spoke up; it certainly helped me.

My rheumatologist worked out that the reason for me being so poorly was an infection, which had also caused a drop in my temperature and issues in my liver. The hospital had all this information, but because there wasn’t an obvious cause, it seemed easier to see me as a hypochondriac.

Your Voice Matters!

The point of writing this article was because I know so many of us with invisible or chronic illnesses regularly face doubt from so many people. It is incredibly hard when you feel those most qualified to help you don’t believe you. I want to encourage you to speak up about this. Doctors are humans, too, and we don’t need to fear them. They make mistakes and don’t know it all. They can learn from us as much as we can from them.

Working together with your doctors is vital to your mental health, as well as your physical health. Never be afraid to disagree with them, educate them, or be honest with them if their attitude is hurtful. In my experience, the best, most respected, and knowledgeable doctors are those who listen to and learn from their patients.

It is so important to be actively involved in your own treatment. You know your body best; don’t afraid to speak up when something concerns you. An honest conversation may just mean a better relationship between you and that doctor, or a better experience for a future patient.

Thanks for reading, and don’t forget: your voice matters.

About the Author:

Rachel is a 29-year old Chronic Illness blogger at www.whatapain.co.ukliving in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Rachel is passionate about challenging stereotypes and disability discrimination. She is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.

Tossing and turning, I was sweating profusely. My hair and back were wet.I looked at the clock – 4:30 am and I hadn’t slept yet.

Actually, I hadn’t slept for 2 days in a row.My thoughts and heart started to race.“What is happening to me?”

I sat up, called out my mom, and pleaded, “Mom, I’m not sleeping anymore. Please take me to the doctor.” Seeing how awful and serious I looked, she embraced me immediately and assured me that we were seeing a doctor that morning.

Weak, eyes popping out, and as pale as a sheet, I told the doctor what I was going through. His face tightened. He took his prescription pad and wrote the words I dreaded – Anxiety Disorder.

Despite a terrible brain fog, I began to examine every area of my life as best as I could.Throughout this terrifying and eye-opening journey, I let go of seven big things in my life. I’m glad I did.

1. Job Title

How many of you daydream about your current or next project while having a meal with your family?Do you text reminders or call your colleagues or clients after work?Or, do you do “quick” paperwork on a weekend?

I was not the only one, was I?

Six months before my diagnosis in 2011, I was promoted as the head of our teaching department. It was just a small department but it was a very fulfilling job to help students to read, write, and speak confidently in English.

When I hit my rock bottom with the anxiety disorder, I was not the brilliant teacher and sharp leader my students and colleagues used to know. I’d stop mid-sentence not knowing what to say next to my students. I’d sit for hours preparing my lessons but I couldn’t finish anything.

With the demands of my work and diagnosis, I decided to give up job (at least temporarily).

2. (Some) Friends

Crying my heart out, I told Mindy (not her real name), “I don’t know if I can survive this. I’m so scared.” She looked at me and hugged me. A second later, she turned to our other colleagues and said, “Hey, I got new sets of beautiful dresses, wanna buy?”

Did she leave me hanging just like that? I was dumbfounded. So, I thought my other friends would treat me better.

I took a deep breath and confided to my closest friends that I was suffering from anxiety disorder. Laura (not her real name as well), a friend for more than half decade, replied, “Mary, I didn’t know that you were that weak. Just fight it off and be positive. It’s that easy.”

That’s another punch in the gut.

I let go of friends like Mindy and Laura. Despite their indifference and painful words that decision wasn’t easy, though. Eventually, I was able to back off and set boundaries to support my healing process.

3. Food

My pants became tight, it was hard to zip them. No, I did not gain weight. I probably lost a lot because I lost my appetite.

I was bloated and my tummy looked like I was pregnant. And I wasn’t pooping for almost a week at a time.

Aside from inspiring me to have more faith and hope, my mom tirelessly encouraged me to eat. Since I couldn’t take the usual amount, we focused on the nutrient dense food that supported my healing. That also meant eliminating junk foods.

I said goodbye to processed food, fast food, and sugar. I ate the rainbow (veggies of different colors) and lots of bananas.

4. Internet and social media

I learned that it was not a good idea to go online and research your diagnosis while you’re having brain fog and lots of terrifying thoughts (especially if you don’t have a trusted place to go to). One piece of advice I read went something like “Don’t talk about your anxiety and depression to your friends.” I was like, “Oh no, I’m doomed!”

I panicked. Then my mom said sternly, “Shut that down and stop searching!”

The internet has a ton of conflicting information while social media has lots of drama.I stopped going online, at least until I was mentally healthy again.

5. Selfishness

I was desperate to get out of my “darkness” but at the same time, I was losing hope. I even imagined my wake, funeral, and eulogy. Then I’d weep, feeling sorry for myself for dying at the young age of 28.

My world stopped but life around me continued.

I observed my sisters going through their day with puffy eyes and dark circles under them. Were they having trouble sleeping because they were worried about me? Were they crying themselves to sleep?Or, both?

My parents and sisters were trying their best to be cheerful and positive for me but I could smell the strong stench of worry, stress, frustration, and the fear of losing me.

This one got me the most.

Losing my will to live, my mom cried and pleaded, “My daughter, do you love me? Please fight and let us help and support you. We do not want to lose you.”

My heart was squeezed.

“This is not only about me.”, I realized. I had loved ones I hurt so much by not fighting, hoping, and taking steps to recover. We were all in it together.

I let go of selfishness and let love fuel me to stand up again and fight my battle.

6. Debt

Debt is one of the top causes of stress and anxiety. So it was one of the first things I dealt with before I took a long vacation.

No, I did not pay it in full. I was almost broke because of my medical bills and no money would come in because I stopped working indefinitely.

One debt was a loan in the office. I met with our finance officer to discuss it and she assured me that my monthly billings would stop and resume only when I get back to work.

The other one was an expensive gym membership. I asked for my older sister’s help and she gladly paid it in full and terminated the membership on my behalf.

7. The need to be needed

I was a perfectionist, know-it-all, get-things-done-girl who secretly could not get enough of praise and recognition for a job well done.

It was music to ears when people say, “Mary, could you please help me on this?” I was elated when they came up to me over and over again. I was needed!

Don’t get me wrong. I’m not discouraging helping, serving, or going above and beyond. These are beautiful things!But I got it all wrong. This need turned into pride, arrogance, and self-righteousness.Worse, I became exhausted, depleted and empty.

I learned to set healthy boundaries, check my motives and say ‘no’ when my plate is almost full.

Bare-naked But Fulfilled

Anxiety Disorder stripped me naked. Suddenly, I was a nobody. I lost my job, health, money, some friends, ego, etc.I was painfully peeled layer by layer until it reached my core.

But…I got my life back.

Over To You

Have you also given up one of the seven big things mentioned above after a diagnosis? If so, which one?

Have you given up something else? How did giving this up help you?

Is there anything you need to let go but you’re having a hard time doing so?

What’s holding you back?

Share your thoughts and experiences in the comments below.

About the Author

Mary is a thriving spoonie, an online solopreneur and a natural healing advocate. Despite chronic illness, she believes spoonies are valuable, strong, and capable of making a difference in our society. Get 10+ Simple & Life Changing Tips To Improve Your Mental Health here.

The Reality

It seems a little ironic that I began to write this piece at the beginning of a long weekend which I spent much of alone. My husband working, and my now grown up children who are pretty much nest flown, not around.

Loneliness, and its close partner isolation, is no small problem in Chronic Illness life. It isn’t something I had any real concept of before falling ill. That is, apart from visiting people who were alone or unwell, and being aware of folk who lived alone. Experiencing it first hand is completely different.

I am homebound, so have become very familiar with the term.

Can We Adjust?

For many people with a chronic illness, loneliness takes some time to accept as a new part of life, and takes time for those folk we know to adjust to knowing about. It’s an uncomfortable reality.

When my children were younger with their busy lives, they brought life and colour to the home. Just hearing them (they were very considerate about noise levels), eased that isolation. As they have matured, the home has gradually become quieter. Methods of communication have changed, which is also a challenge. Far less sitting at the end of the bed catching up on news. I know I am fortunate to have had that.

Being Brave

A big part of the challenge, and I personally see it as a challenge, is trying to adjust to it, not letting it defeat us and finding ways to help alleviate it. Easier said than done, I know.

So, I guess one of the hardest places to start is looking that gut wrenching statement in the eye and saying, yes, I admit it. I feel lonely. Ugh. I’ve done it.

Ways to Help Break the Loneliness

We need to be able to voice the isolation. We need ways to help us cope. Here are a few ideas.
• Tell someone. I know, far easier said than done.
• Contact/engage with a Support Group. Whether it be in person (if you are able), a forum, on Facebook, or interact on platforms you feel comfortable with or can manage. I was terrified when I first joined an online group. But I’ve made some lovely friends through it. None of whom I’ve met in person, yet! Like all things, it needs to be a balance you can manage.
• Messaging/texting. Maybe start a group chat that you can manage. Texting/messaging has been my life saver for years. Even though it often at one time could only be a single sentence.
• Phone calls. Not easy for or accessible for everyone, but they do help and can be planned in advance and a time and length set.
• Try to organise Support at home. Knowing someone will be popping in to help makes a world of difference.
• Try & keep your immediate Neighbours aware. Have their contact details if possible. If you feel comfortable with that.
• Gently remind people. Life gets busy and folks can forget.
• Invite a friend to pop by even if just for 10 minutes.
• Develop a hobby that you can enjoy without increasing your symptoms. I now have a little art/craft go to space, for that 10 minutes of ability.
• Is there a friend who might occasionally join you in that hobby?
• Listen to music. Build up a playlist or lists for different moods.
• Radio. I find some light-hearted Q&A type programmes helpful, when I can concentrate, as you’re hearing interaction. (TV is a no-no for me as it is too tiring).
• If book reading is possible, consider joining an online book group. Or write your own short review to look back on.
• Start a journal, to write your thoughts. And of course that means the opportunity to use Washi tape!
• Consider a Pet Companion.
• Write – a blog, poetry, haikus, a short story. This is of course, like so many strategies, subject to energy levels.

I do use many of these strategies in bite size pieces. Having face to face conversation I find very tiring, along with phone calls, hence the isolation. But with messaging, you can pace it. Especially with texting, as there is no pressure to formulate a quick reply.

I know, lists are all very well and I hope some of the suggestions might be of help. I’ve chosen to expand on one.
As I’m an animal lover, guess which one?

Pet Companions!

I’ll admit I am an out-and-out dog lover. I used to love taking my dog out and just enjoying their company and the elements. (I still do it in my mind). Walking a dog has been beyond my reach since onset of ME/CFS 14 years ago. And having had to say a heartbreaking farewell to our aged adoptee early on in the illness as age took him, could I/we ever have another? He was very special. Well, they all are. I’ll admit there was a void.

Details to consider

Ok. Yes! Before I continue, I can hear you asking. ‘Why on earth have a dog if you are housebound?’ I had that very same thought myself, for quite some time. I’ll explain as I go.

You’ll need two checklists.

The First Checklist

• Do you have any allergy issues to consider?
• Their daily care
• Suitable space for them to sleep, rest, have their little home/bed.
• Do you have any supplies already?
• Toileting and play space
• Storing their food and belongings
• Will they be with you in your room, do you need a blanket for your lap, bed, etc?
• Depending on the pet. Are you happy for them to have access to all areas of your home?

Where to Look

Our first companion adoptee came from a rehomer kennel very near by. Another point to bear in mind is, can you visit and will more than one visit be needed to the pet you hope to adopt? What is the adoption fee and general costs to get organised? You may notice I’m mentioning the word ‘adopt’. I’m an ‘adopt, don’t shop’ kind of person. But of course, it’s a personal choice.

An option could be to foster a pet for an animal charity or take on a pet via a charity that organise long term foster for pets that can no longer be cared for by their owner. This will generally mean that they will meet all veterinary costs, adoption fee, sometimes food, possibly exercise depending on the charity, of course depending on the chosen pet. But not carpet cleaner!

There will often be a home check involved for adopting/fostering a dog or cat.

Which Pet?

You could consider a:
• Bird
• Small mammal i.e. Hamster, Guinea Pig or Rat
• Reptile
• Fish (I have a 14 year old goldfish!)
• Cat
• Rabbit
• or of course a Dog
• There must be more that I’m yet to think of.
I would consider a cat, but am allergic. So that is a no for me.

The Second Checklist

As with all pets, there are care needs to consider.
• Pet Insurance
• Registering with a vet
• Food & feeding
• Washing bowls/water bottles
• Grooming
• Washing bedding
• Cleaning out a cage, cleaning a filter, litter tray, cleaning up poop (sorry, but it’s a given).
• And where dogs are concerned, do you have a garden or yard and is it secure? And exercise beyond the home.

Many pet foods can be ordered for delivery and bedding too.

It helps to work out who can help do what, can you manage any of it, and would you enjoy it? It‘s certainly not something to rush at. Best to have everything in place as best as possible, then any unexpected happenings won’t rock the boat too much. There will be an initial settling in period as you get to know each other’s routine.

And most importantly, what would having a pet companion bring into your life?

How Did I Decide?

Interestingly, a home visit from a Physio/OT a few years ago mooted the idea of us homing another dog. I think they saw the gaping hole our previous hound had left. She helped me think about strategies to make it possible, but there were some not thought of. We worked them out over time.

I was still unsure. Concerned how the caring side would go. But my husband was keen to see my face light up again. Sighthounds were suggested, as they are tall – little bending needed to pet etc, and they don’t require long walks, i.e 20 minutes twice a day as opposed to 1-2 hours. Thus making this more manageable for family alongside their caring role.

My Experience

We looked into it, and after a little time adopted a pickly greyhound from a local rehomer kennel. Tall and quiet at the kennels. Nutty when he got home to warm blankets and a sofa. We were hooked. He became my 24/7 companion for the next decade. And apart from his slightly dodgy tummy, he was great. His understanding of my need for frequent lying rest and my days being slow was astonishing considering he had never previously known home life. He loved cuddles, play and company. And was oh so quiet and oh so accommodating.

The absolute worst part was the final farewell. He lay in my arms, with my husband and myself trying to hold it together. We didn’t. He had given more than can be put into words and brought joy to each day.

Could there be another?

I thought probably not, with children grown and flying off. But then a local dog walker came to my notice online. Mmm, interesting, I thought. And my husband again wanting to see that smile return.

I tentatively looked. We are more suited to a mature dog, as a young dog or at puppy stage wouldn’t be suitable for us or us for them. Possibilities came and went. I deliberated. Then a little beauty unexpectedly peeped out at me from a rehomer site. She’ll be gone in seconds, I thought.

Well, she was. Under my duvet!

Is it worth it?

I would say absolutely yes. Ok, there are times when paws may be muddy (on the bed!) and the odd early wakeup call. But I get to meet other dogs at my door as our houndie goes off for ‘playdates’. We fit these in with my husband’s work routine, to ease his load. I meet another lovely person, who’s also nuts about dogs. I also met the lovely foster mum, who so kindly brought our houndie here to meet me, as I couldn’t travel to her. We also have another friend who will help with exercising if needed. As you can probably tell, it’s a team effort.

I’m never alone. I have a playful fight for the duvet. And a constant distraction from loneliness and symptoms. I get to think about another’s needs and routine. Having a dog has increased my friendship group, brought stacks of giggles and improved my day to day mood. And there is always a hug waiting, wagging tail, gentle whine and a listening ear and endless cuddles. Oh and again, I’m never alone.

I asked the question among some of the spoonies I’m in contact with. And having their permission to include them, here are some thoughts about their Pet Companions.

Firstly, about Cats ~

Fay: “Having lost my pet companion, I can share how I miss his gentle breathing, stroking his lovely soft fur. Having M.E. my social life is restricted, and my cat would always run to greet me, making me feel loved and wanted. He brought me joy, even though he was an extra mouth to feed and lifting cat litter got harder each time.”Sharon: “My cats are my constant companions, who sense when I need comfort, and are there for me when I’m home alone.”
Melanie: “At one point the other day, I was crying over my current pain (a torn tendon in my foot). For the rest of the day, my cats did not leave my side.”
Natasha: “I spend the majority of my time stuck in bed alone. Merlin, my cat, is company for me and entertainment when he is playing. It gives me someone to love and something to love back. He’s very affectionate and knows when I’m really struggling physically and emotionally. I’d be lost without him. Pets are so therapeutic. He’s my baby substitute too, lol!!”
Colette: “When I look at my cat and her silly sweetness, it brings me so much joy. I’m not sure I could take care of my cat without living with others. Cats are way easier than dogs, but there is still work way beyond what I can manage most days.”

And some thoughts about having a dog ~

Teri: “As I write this my overactive Springer Spaniel is curled up with me and I love how her closeness makes me feel happy and calm. On the downside a Springer is not the best choice for someone Chronically sick (ME, Fibromyalgia) as she is on the go all the time and can’t be left in the garden unsupervised.”Phil: “I miss my dog Bess so much as she knew when I was heading for an attack without anyone teaching her how. She could give me up to an hour’s notice and frequently woke me in the night to let me know, licking until I awoke. (Coronary Syndrome X is the official title, translated as Coronery Artery Spasm.)”
Paula: “My dog Jess is so important to me. The M.E. means that I have to spend a lot of time alone. Missing out on a social life as well as attending family outings etc. Jess is the company I need. She is often curled up on the bed or sofa next to me. I also find her presence calming when anxious.”
Michele: “My dog is part of my family. She motivates me and loves me unconditionally. The only downside for me is that I can’t walk her. I have had CFS and fibro for ten years now.”

Closing Thoughts

I’d say, if you like animals, then a Pet Companion could be well worth considering. Take your time to work out the details and what will be best for you. It will be time well invested. And if it’s not the right time, right now, perhaps invite a friend to visit with their pet, to help the decision process and enjoy their company at the same time.
Thanks for reading.
Penny from Hope found in M.E.

About the Author:

Penny is a Christian, Hope & Chronic Illness blogger, homebound by ME/CFS since 2004. Blessed with a husband who travels the bumpy ‘spoonie’ road in support. Pretty much an empty nester, but still a houndie mum. Penny started her blog in 2016, and aims to share hope, faith, encouragement and creativity with some humour. Laughter is a favoured hobby. She also dips into some sensitive topics within Chronic illness life. You can find Penny at www.hopefoundinme.wordpress.com.

The Beginning of Life with Lupus

I live in Florida, the Sunshine State, where it just so happens that the sun has become my worst enemy. At the age of twenty-six, I was diagnosed with systemic lupus erythematosus (SLE). It’s been a roller coaster experience.

It remains one of the hardest things I’ve ever been through. My symptoms began around the end of October 2015, when one day I randomly woke up with a big rash on my face. I would go to work like everything was normal and everyone would ask, but I just kept saying it was allergies. Because that’s what we all thought. Allergies.

One Sunday morning I’ll never forget, I went to work like I normally would. But this time, I started feeling so bad and felt my face slowly swell up. I called my mom and sent her a picture. She said, “You have to go to the hospital.” And so I did. The first time they put me on an IV and allergy meds. After that visit, I had to see an allergist. So I went and she did a million and one painful and uncomfortable allergy tests. She told me, “You have allergies, but what you are going through right now isn’t an allergic reaction.” She suggested I see a rheumatologist. But before I could see the rheumatologist, I ended up in the hospital again because my face swelled up a second time.

My Harsh Reality

This time a nurse kept insisting it was Lupus. And that was the first time I had ever heard of this disease. After that, I finally saw the rheumatologist. They did a whole lot of tests and took lots of blood and urine. Afterwards, I also saw a dermatologist which double confirmed it by doing a skin biopsy. I had SLE. It hasn’t spread out, but I do feel a lot of fatigue and I am constantly getting the butterfly rash and just rashes in general.

The “Fun” Stuff

So all in all, I went to the hospital two times before I officially got diagnosed with SLE. After I got diagnosed, my hair started falling out and it crushed me. I was so scared and so self-conscious and it had me so emotional. I also started my treatment of Prednisone and Plaquenil. And now most recently, I started on Imuran. Scratch that, I tried it for about a week and it sent me to the hospital. I thought I was going to have a heart attack! No more Imuran for me.

The side effects have me going crazy on a daily basis. One day I’m good, the next I feel bad, but I guess that’s what happens when you’re a Lupie. The major things I’ve been struggling with lately are the weight gain and losing my hair again. I try so hard to be strong and keep my faith.

But I’m alive and I am thankful for that. Now I take medicine every day and I go to my doctor’s visits. All the while, I am still trying to get used to all the new symptoms I experience.

I suffer from minor anxiety as well as minor depression. I don’t take meds for them because I try to control those icky feelings myself. I’ve always felt that I caused myself to have lupus. In 2012, I suffered a traumatic experience where I tried to commit suicide due to feeling overwhelmed by life. I let myself fall into the deepest hole I’ve ever fallen into and I vowed to never, ever again take antidepressants.

The Recent Years

These past two years have been absolutely crazy. I’ve gone to the hospital about four times. And this lupus life has managed to change not only my life but my relationship, too. See, I’ve been with my boyfriend for seven years and I’ve been living with him for five. My diagnosis has taken a huge toll on him, too. I’ve changed so much since he met me.

It might sound ugly, but I always say that I feel like the old me died and I was reborn as the me with lupus. I find myself to still be in denial. And maybe, just maybe, one day I’ll be able to say I’m okay with this and play the card I was dealt. As of yet, I’m not completely ready. I work full time and I do everything I’d normally do. Except it’s hard for me to do little things like clean my house and do laundry. Thankfully my boyfriend helps me with it and I just hope this keeps making us stronger as a couple.

Daily Life

I deal with a lot of fatigue on a daily basis and the famous butterfly rash. One of the main things I deal with that I’m self-conscious about is I’ve gained over 40 pounds since I got diagnosed and started taking prednisone. I’ve also already experienced shingles (which was the worst pain I’ve ever experienced last year on Christmas Eve). Now I currently have a stress fracture in my right foot and am condemned to wear a boot for 6-8 weeks.

Thankful

Having lupus makes me thankful for a lot of things.

I am thankful for the internet!

I am thankful I have the support of my family and friends who help me get through the tough times.

I am thankful I came across an online support group so I can learn more about lupus and how to deal with it. It’s nice to talk to people who know exactly what you’re going through and not have to worry about being judged or looked at differently.

I honestly don’t know what I would have done if The Unchargeables didn’t exist. It has helped me so much. There’s so many great people on here who, without knowing me in person, offer lots of emotional support along with awesome advice. It’s a place where you can come together with people who completely get it and a place where you can come vent and everyone will listen.

Thank you for letting me share my story that I’ve never really opened up about before.

About the Author:

Cynthia is 28 years old and was born and raised in Miami, Florida, to parents from Nicaragua. She works full time and lives with her boyfriend. She was diagnosed with lupus (SLE) on January 22, 2016 following the appearance of a series of red rashes on her face. Now she just tries to take it day by day, though she finds that some days are easier than others.

A Sunny Day…

(with fibromyalgia)

I’ve been waiting so long for this. It’s sunny and beautiful out today. Usually a rare appearance of the sun lifts my spirits and makes me feel better. But today I don’t want to know. I don’t want to know that the sun is out and the sky is clear. I don’t want to see people walking their dogs or out for a run. I don’t want to see it because I know I can’t enjoy it today. I can’t enjoy it like the people all around me taking walks or just going about their business in the warm sunshine. Just thinking about taking a walk makes me tired. And even if I sit out in the sun I know I won’t be able to enjoy it the way I used to. I won’t be able to focus on how lovely it is because I’m too exhausted to focus on anything. And the pain and random ailments in my body are too distracting. The warm weather and birds chirping are all a sad reminder that I can’t enjoy life.

Instead of waking up and being greeted by a gorgeous day I’m sitting on my bedroom floor crying because I’m so tired. I went to bed at midnight last night, which is early for me. I’m a night owl and can easily stay up to 4am before realizing I should probably get some sleep. But these days I have to get to bed early to have any chance of functioning like a normal human being. And even then it doesn’t always work. Some days it seems very random; even if I get a full eight hours of sleep I wake up feeling like I just blinked and now I have to keep going alongside people who have slept, are fully rested and eager to use the energy they’ve recharged to get through the day. I feel like I haven’t slept in years. That the days just continue on with no rest in between and there isn’t anything I can do about it.

For a long time I chastised myself…

if I just did the right things I wouldn’t feel like this. The truth is it actually feels better to beat yourself up because you are convincing yourself that you have some control. The reality is that I don’t have much control over how I feel. I just have to try my best and hope that my body will respond. And the trying is hard on an already tired mind and body. Having to constantly do the best thing for myself feels taxing. Having to make decisions I don’t want to make about how I spend my time and not getting to do things I want to do is psychologically painful and wears on me.

The Worst Part

The worst part really is that there’s no one to say these things to. I live alone and when I come home from the end of a long day there is nothing in the world I want more than to say to someone “it really sucks to live with a chronic illness”. That’s all I want. I don’t need someone to fix it or tell me what I should be doing. I just need someone else to know what I’m going through. To have a glimpse into what it’s like to have to go through life being me. To care. But there’s no one to receive the words. I don’t have any support system to speak of and that’s part of the problem. The loneliness feeds the illness like bacteria. It’s a constant frustration. I have tried relentlessly to build meaningful relationships. I have been involved in numerous groups and activities. I have constantly reached out to others, sometimes despite my own health. But it never really paid off. And still, even through the “fibro fog” there’s so many thoughts I’d like to share. If there was someone to hear.

If there was someone to hear today I’d say take this beautiful day away or at least distract me from it until I hopefully, someday again feel well enough to go out and enjoy the sun.

Rebecca is a free spirit who lives resiliently with fibromyalgia. She lives for sunny days when she feels well enough to make it to the lake.